How do we know it is MND?

[jcmatch]

My husband has had slurred speech for a few months , with nasally voice and excess saliva. He is 57. His GP sent him to a neurologist, who conducted an ecg and cartoid doplar scan thinking it may be a stroke. these were clear, so he referred him for an EMG, NCS and MRI scan. He has no muscle degredation or weakness, other than slurred speech. I dont think he had fasciculations prior to the EMG. After the EMG he started with twitching in his upper arms, then within a week his chest and calf muscles We saw the 2nd neurologist last week, the MRI was clear, however as his EMG was abnormal, he can't rule out MND at this stage. He has asked for us to go for a further MRI of his neck in case it is compressed or herniated discs and to go back in 4 weeks to see if there is any change.

4 weeks is a very long time to wait, not knowing! Could the fasciculations be triggered by the EMG or by stress? Is it normal for them to all appear so suddenly, without any weakness?

Any help would be greatly appreciated.

 

[soonerwife]

Stress can cause fasciculations. Sorry to hear about your husbands diagnosis. Hopefully they will find it is something else?!

My husband has Bulbar Onset ALS. His started with slurred speech. He didn't know he had weakness at all until he was diagnosed 18 mths after the slurred speech started. His fasciculations didn't start until 17 mths after the slurred speech.

I'm not sure there are two cases of ALS that are alike...

You have found a great place for support.

 

[Firefighter58]

Soonerwife, your husbands case sounds very similar to mine, with about the same time frames
Al

 

[Jennanne]

Hi jcmatch,

My husband is also bulbar onset and is 58. He started with speech changes about a year ago, but we did not see a doctor until September (he was scared to go thinking he had a tumor). At that time it was speech only, but by the time he was diagnosed in December he had fasciculations all over. I first noticed them in October after he had helped our older son move. This was when we were going through the diagnostic process and I definitely think the stress on his body accelerated things.

I know exactly what you are going through. We had the EMG, and initial head MRI and blood work and had a preliminary diagnosis of MND but still had to wait for further neck/spine scans and more bloodwork for the final diagnosis.

I am not a patient person.... at all, my only advice would be to stay off Google, I spent way too much time there and my time would have been much better spent doing things with my PALS. I'll be thinking of you and hoping they can rule out MND!

Sincerely,
Jenn

 

[jcmatch]

Stress can cause fasciculations. Sorry to hear about your husbands diagnosis. Hopefully they will find it is something else?!

My husband has Bulbar Onset ALS. His started with slurred speech. He didn't know he had weakness at all until he was diagnosed 18 mths after the slurred speech started. His fasciculations didn't start until 17 mths after the slurred speech.

I'm not sure there are two cases of ALS that are alike...

You have found a great place for support.

Thank you so much for replying, I do appreciate all cases are different, i am still holding out hope that it isn't ALS at all, but preparing for the worse.

 

[jcmatch]

Jennanne
Thank you for taking the time to reply, I am so sorry for what you are going through, it is the most horrendous time of my life at the moment. We are preparing for the worse but hoping for the best. It seems like our husbands symptoms and timelines are similar. I do believe the twitching has got so much worse since the EMG and consult with the neuro, so will try and find a way to cut out the stress while we wait for the next results.
I will keep checking back on here, it is nice to know you are not alone.

 

[Jennanne]

Same, yes also the most horrendous time in our life as well, the waiting and not knowing is actually worse. At least when we found out for sure we could start planning and as bizzare as it sounds it gets a little better. It truly is a new normal for us.

I love your saying prepare for the worst and hope for the best. It is one of my favorites

Jenn

 

[lgelb]

JC, if you can post the EMG report, we could be more helpful. But yes, what you describe could be ALS.

Best,
Laurie

 

[jcmatch]

JC, if you can post the EMG report, we could be more helpful. But yes, what you describe could be ALS.

Best,
Laurie

Thanks Laurie, we will try and get hold of the report today. Any help greatly appreciated in this waiting phase.

 

[Kristina1]

Hugs, the waiting is hard.

I did not notice fasiculations until after my first abnormal EMG, when I found out ALS was a possibility. I had been having symptoms for about 15 months- voice/speech changes, muscle cramping & stiffness, aspiration on saliva/liquids, and progressive weakness in my dominant hand. Looking back, I wonder if the fasiculations truly didn't start until shortly before my diagnosis, or if I simply didn't notice them and they had been there already. They started out very mild/gentle, and were easy not to notice. At my first referral to a neuro she examined my tongue and waved the resident over to take a look. When I got home I looked in the mirror at my tongue and saw it vibrated like some kind of alien tongue! Who knows how long it was having fasiculations? I never would have thought to examine my tongue so I have no idea when it started.

All that is to say- maybe your husband has had twitching for longer but did not notice it until you both were on the lookout for it.

 

[jcmatch]

Kristina1, thank you for your thoughts. As you say, the fasciculations didn't start/be noticed until after the first irregular EMG, but may well have been there for some time. He has had voice/speech changes for approximately 6 months now, no swallowing, saliva or choking issues, yet. No muscle weakness or degredation, fit and healthy in all other ways.

He had an MRI of his cervical spine on Sunday to rule out compressed disks of the neck, waiting on results and next neuro appointment next week. Still praying and hoping, but being realistic. My husband hasn't done any research on google or here as he doesn't want to know yet, so when he says, I'm feeling very nasaly when I talk, he thinks that's good and could be sinus/catarrah related, whereas I think that's just another sign of ALS?

Thank you for your time writing back and reading my posts!

Regards

 

[jcmatch]

Worse nightmare came true yesterday. we saw the neurologist who has confirmed my husband's diagnosis of Bulbar onset ALS. He has suggested having a further NCS/EMG test to see how things are progressing and is referring us to Queens Square, university college hospital London.

I know we are still in shock at the moment, but how long does it take to learn to live with this on a daily basis and not focus on the future, or lack of it, all the time. I don't think I have any tears left.

Does anyone have any experience of roughly how long my husband will still be able to talk for? He has nasally speech and slurred speech at the moment but is still fairly coherent, i don't want to bombard him with we need to do this and that etc straight away, but would be keen for him to record his voice while it is still understandable. I know I'm running ahead again, but no idea what else to do.

Thank you for your support so far, i think I will be on this site a lot more in the future. Your stickys have all been very helpful.

 

[Nikki J]

I am very sorry. Time frames, both for shock recovery and progression are individual. Certainly for shock it is likely to be weeks but how many depends on the individual situation.

The sooner the better for any voice recording as it can't be predicted. Are you thinking just recording so you have the memory or something that can be used to speak in his voice like modeltalker? If the latter one way to approach this would be that it does take time and can be tiring. More tiring the longer you wait so easier now. But of course this is not a conversation for today. You could research it though and get things set up so when you/ he are ready it is set to go.

 

[Jennanne]

Hi jcmatch,

I am so sorry that your husband's diagnosis was confirmed. ALS does suck, it really does, but things do get better I promise! After my husband was diagnosed (12/16 days before his 58th birthday, bulbar onset) we bumbled through the holidays. We only told very close family/friends and did not tell our girls (14 & 11) until our second opinion in January. I, like you cried every single day at first, each time I would try to picture our future it was like the lights went out everything was dark. I cried even harder when I would pull in my driveway and see our camper and boat because they instantly reminded me of a future that we would never have. At some point, between then and now we started to adapt to our ever changing surroundings and started making modifications to our everyday lifestyle and house. We had safety bars installed in the bathrooms and now have a stair lift. The advice given on the sticky's is to anticipate what you will need ahead of time and to start the process of obtaining it, that is absolutely 100% true!! This was easier said that done, but it helps so much!

That black hole future feeling is still there, but it is nothing like it was a few months ago. My PALS is still working, he is incredibly fortunate to have a very understanding boss who allows him to work at home most of the time. We are getting our camper ready for the summer and a rail just arrived yesterday (gotta love Amazon Prime LOL) so he will be able to pull himself up the stairs of the camper. He walks with a walker, his ankles and hands are weak but he can still do many things with his hands that do not require too much strength.

To answer your speech question, I can only speak from experience. My PALS began losing his voice (raspy and slurred) last June, he can still be understood as long as he speaks slow and low. I usually have to have him repeat so I can understand him, but our girls can understand everything he says the first time it comes out of his mouth. It is truly amazing how adaptable children are! If he is able, there is a program called Model Talker (I think that is the name) which can bank his voice. We tried through our local university back in December, but at that time his voice was too weak to calibrate the system. If your husband can do it, I would definitely recommend it ASAP I miss his voice so much! It is pretty labor intensive, and requires many sessions to record his voice. Right now he is using an app called Predictability on his iPad (text to speech) which works pretty well (when he uses it). He still tries very hard to talk, but it is difficult to speak in conversation so I have really been encouraging him to use the app (he is a little on the stubborn side).

Please feel free to ask me anything, our situations sound very similar.

Jenn

 

[jcmatch]

Nikki

Thank you for your reply. I personally am thinking about recording his voice so he can use his own voice to communicate, the issue is that he doesn't want to know anything about timeframes at the moment, so I can't rush him without panicking him and I believe the stress is making things move much faster. I will start looking into it and making plans and hope that by the time I can discuss it with him, it isn't too late.

I really do appreciate your thoughts.